Precompetitive data sharing as a catalyst to address unmet needs in Parkinson's disease

Diane Stephenson*, Michele T. Hu, Klaus Romero, Kieran Breen, David Burn, Yoav Ben-Shlomo, Atul Bhattaram, Maria Isaac, Charles Venuto, Ken Kubota, Max A. Little, Stephen Friend, Simon Lovestone, Huw R. Morris, Donald Grosset, Margaret Sutherland, John Gallacher, Caroline Williams-Gray, Lisa J. Bain, Enrique AvilésKen Marek, Arthur W. Toga, Yafit Stark, Mark Forrest Gordon, Steve Ford

*Corresponding author for this work

    Research output: Contribution to journalArticlepeer-review


    Parkinson's disease is a complex heterogeneous disorder with urgent need for disease-modifying therapies. Progress in successful therapeutic approaches for PD will require an unprecedented level of collaboration. At a workshop hosted by Parkinson's UK and co-organized by Critical Path Institute's (C-Path) Coalition Against Major Diseases (CAMD) Consortiums, investigators from industry, academia, government and regulatory agencies agreed on the need for sharing of data to enable future success. Government agencies included EMA, FDA, NINDS/NIH and IMI (Innovative Medicines Initiative). Emerging discoveries in new biomarkers and genetic endophenotypes are contributing to our understanding of the underlying pathophysiology of PD. In parallel there is growing recognition that early intervention will be key for successful treatments aimed at disease modification. At present, there is a lack of a comprehensive understanding of disease progression and the many factors that contribute to disease progression heterogeneity. Novel therapeutic targets and trial designs that incorporate existing and new biomarkers to evaluate drug effects independently and in combination are required. The integration of robust clinical data sets is viewed as a powerful approach to hasten medical discovery and therapies, as is being realized across diverse disease conditions employing big data analytics for healthcare. The application of lessons learned from parallel efforts is critical to identify barriers and enable a viable path forward. A roadmap is presented for a regulatory, academic, industry and advocacy driven integrated initiative that aims to facilitate and streamline new drug trials and registrations in Parkinson's disease.

    Original languageEnglish
    Pages (from-to)581-594
    Number of pages14
    JournalJournal of Parkinson's Disease
    Issue number3
    Publication statusPublished - 14 Sept 2015

    Bibliographical note

    © 2015 – IOS Press and the authors. All rights reserved. This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License.


    • collaboration
    • data integration
    • data standards
    • privacy
    • quantitative disease progression
    • regulatory science


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